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Enlarged lymph nodes for nearly 5 months, any thoughts?
im a 23 year old male. about 5 months ago i had a pretty sever case of laryngitis and got on anti biotics to clear it. it worked however shortly after stopping the anti biotics my lymph nodes on the left side of my neck swelled. they were not painful even at first, they are only about the size of a pea to a bean. i must emphasize they were not there prior to the illness as im very body conscious and i also have none of them on the right side. my doctor agreed it was odd so ordered a chest x ray, that showed very minor fluid so they did a Ct scan which was clear (the fluid was from my body fighting off the remnant of the infection they assumed since it was gone) after this i was told to wait a few weeks and the nodes should shrink however they didnt, my doctor then checked me for mono, Tb, HiV AND EVERYTHING under the sun in my blood work, the only oddity was my B12 was very minutely low which was assumed because i had hardly been eating. The doctor then ordered an ultrasound of the nodes, it showed nothing out of the ordinary besides stating they were slightly enlarged with the largest being just under a centimeter and i had a 5mm cyst on my thyroid. I was sent to a thyroid specialist who was unconcerned about that. I also seen an ENT who said my nodes didnt worry him at all however he abd my doctor disagree on them going away; my PcP said my nodes are most likely 'scarred' or nodes that respond to infection and dont ever return to normal size while the ENT said they probably will go down someday.
my concern is if they missed something, I know the nodes arent big but there are 5-7 of them in my neck that size asymetrically just on one side. they have been there for 4 months now (nearly 5) with no change and i have read about slow growing lymphomas like Hodgkins etc that can take years to fully manifest. i really want a biopsy but they all say my nodes dont 'meet the criteria' but i know that ultrasound is not the definitive test here. Has anyone else had nodes that never quiet returned to normal size? several doctors seem sure they are of no concern but since none can explain them, or even agree if i should expect them to stay, should i be concerned?
my concern is if they missed something, I know the nodes arent big but there are 5-7 of them in my neck that size asymetrically just on one side. they have been there for 4 months now (nearly 5) with no change and i have read about slow growing lymphomas like Hodgkins etc that can take years to fully manifest. i really want a biopsy but they all say my nodes dont 'meet the criteria' but i know that ultrasound is not the definitive test here. Has anyone else had nodes that never quiet returned to normal size? several doctors seem sure they are of no concern but since none can explain them, or even agree if i should expect them to stay, should i be concerned?
COMMUNITY LEADER
"Overall do you agree with his assessment?"
Yes.
"Or do you think more looking into it should be done?"
Yes, but look for the real cause, which is not a cancer.
"I have no other signs of Marfans"
Then consider any CTD, such as Ehlers Danlos, which is associated with mystery conditions of the immune system.
"geneticist"
did they happen to find MTHFR?
Yes.
"Or do you think more looking into it should be done?"
Yes, but look for the real cause, which is not a cancer.
"I have no other signs of Marfans"
Then consider any CTD, such as Ehlers Danlos, which is associated with mystery conditions of the immune system.
"geneticist"
did they happen to find MTHFR?
1 Comments
The numerologist and geneticists were very thorough, I must impress Iowa City Hospitals and Clinics are some of the most renown in the US and I honestly can’t tell you everything they checked for because there was so much they did. They ruled out a lot based on the fact that I’m now 24 and still in good health; given my cataracts at birth many conditions would have had serious onset by now they said. That and while bilateral cataracts are rare 98% of them are the same kind, mine are the 2% that aren’t ruling out more conditions. They did genetic testing for Ehlers Daniels and came back negative, they genetic tested myotonic dystrophy which was also negative. Genetics and nuerology really came together investigating me over the course of a year or two and came back to tell me while I’m a freak of nature they really don’t see any reason to suspect my ‘condition’ is going to cause any complications beyond my cataracts and hyper mobility I already have. I actually have a follow up on August 3 years since I’ve seen them (routine for cases like mine they said, just to check for any changes but not suspecting anything)
With the lymph nodes I also have an update, I seen the ENT again who said he really thought my nodes were just my anatomy since they were so small and I’m so skinny. I explained how they aren’t and how they are asymettrical from one side to the other. He still said he wasn’t concerned but said for my peace of mind he’d do another ultrasound. He said biopsy would be unlikely given how small they are, he said they were likely to miss and give bad samples which could lead to inconclusive, and he knew how I would worry about that. (He’s right) so we did another ultrasound, I don’t have the results with me but he called and said they used Doppler, all blood flow looked normal, he said all the nodes had a healthy “kidney bean shape” explaining how a cancerous node would make the bulge for more rounded. He also had access to my last ultrasound and said everything is the same size as before (the last ultrasound was 4 months ago just about) and he was very confident this is just my anatomy and that even something slow growing would have progressed by now at least enough for the US to see. Now he was very helpful, the only thing he didn’t mention was the helium fatty deal I know you asked about. But in saying everything looked good I assume that was there. I’ll get the actual report and post it.
All in all the ENT was very helpful but seems to think they are normal and I must insist I’ve never had these until after my infection in October. Still given the sono’s 4 months apart both looking exactly the same would you agree that this is most likely nothing to worry about?
With the lymph nodes I also have an update, I seen the ENT again who said he really thought my nodes were just my anatomy since they were so small and I’m so skinny. I explained how they aren’t and how they are asymettrical from one side to the other. He still said he wasn’t concerned but said for my peace of mind he’d do another ultrasound. He said biopsy would be unlikely given how small they are, he said they were likely to miss and give bad samples which could lead to inconclusive, and he knew how I would worry about that. (He’s right) so we did another ultrasound, I don’t have the results with me but he called and said they used Doppler, all blood flow looked normal, he said all the nodes had a healthy “kidney bean shape” explaining how a cancerous node would make the bulge for more rounded. He also had access to my last ultrasound and said everything is the same size as before (the last ultrasound was 4 months ago just about) and he was very confident this is just my anatomy and that even something slow growing would have progressed by now at least enough for the US to see. Now he was very helpful, the only thing he didn’t mention was the helium fatty deal I know you asked about. But in saying everything looked good I assume that was there. I’ll get the actual report and post it.
All in all the ENT was very helpful but seems to think they are normal and I must insist I’ve never had these until after my infection in October. Still given the sono’s 4 months apart both looking exactly the same would you agree that this is most likely nothing to worry about?
COMMUNITY LEADER
Watch-and-wait is when a person is already known to have a cancer and the best approach is to do nothing, because the cancer is so slow growing that there is no need to undergo the possible harm from the treatment. So this is not watch-and-wait.
In your case, the odds that this is a cancer are very small and thinking about cancer just gets in the way. Here's what I'd suggest: set your mind instead to thinking about why your nodes behaved the way they did. That means you'd learn about how the immune system works, including about how and why fibrosis and/or granulomas happen. If you like, I'll look up a good intro lecture.
Understanding all about the most reasonable and likely (benign) explanation might be just the ticket to taking your mind off of jumping directly to the worst possible (cancer) explanation.
I'd only want a needle biopsy if the nodes started growing and didn't stop growing, or they started multiplying. So that's something almost like a watch-and-wait, except we wouldn't expect any of those two concerning signs to actually occur - we just want to be aware if they did occur.
"how slender I am"
Have you ever heard of Marfan Syndrome? If you look that up and think you might qualify, let me know.
Here's a start: https://www.marfan.org/about/signs
In your case, the odds that this is a cancer are very small and thinking about cancer just gets in the way. Here's what I'd suggest: set your mind instead to thinking about why your nodes behaved the way they did. That means you'd learn about how the immune system works, including about how and why fibrosis and/or granulomas happen. If you like, I'll look up a good intro lecture.
Understanding all about the most reasonable and likely (benign) explanation might be just the ticket to taking your mind off of jumping directly to the worst possible (cancer) explanation.
I'd only want a needle biopsy if the nodes started growing and didn't stop growing, or they started multiplying. So that's something almost like a watch-and-wait, except we wouldn't expect any of those two concerning signs to actually occur - we just want to be aware if they did occur.
"how slender I am"
Have you ever heard of Marfan Syndrome? If you look that up and think you might qualify, let me know.
Here's a start: https://www.marfan.org/about/signs
3 Comments
"we wouldn't expect any of those two concerning signs to actually occur"
and even if they did occur, cancer is still not the most likely explanation.
...and I suppose that the way you are using "watchful waiting" is different than the way I am using "watch-and-wait".
and even if they did occur, cancer is still not the most likely explanation.
...and I suppose that the way you are using "watchful waiting" is different than the way I am using "watch-and-wait".
I do have congenital cataracts and hyper mobility in my extremities and while I do have long arms and fingers I have no other signs of Marfans. I should mention a few years ago I went through pretty substatial investigation by neurologists at Iowa City Hospitals and Clinics as well as a gebeticist and pediatric geneticist. I would image they would have considered that wouldn’t you?
And actually one of the last tests they ran was an ultrasound of my heart to make sure I had no connective tissue issues there, that came back with nothing out of the ordinary from what I understand, which sounds like it rules out martens for the most part doesn’t it?
COMMUNITY LEADER
I would sincerely not want a surgical biopsy.
1) there's no reasonable suspicion that it's cancer
2) there is a very believable alternative cause: fibrosis
3) nodes have a useful purpose, they shouldn't be cut out without good reason
4) surgery always has risk. A famous example is that Joan Rivers died from a routine cosmetic surgery
However, you can ask for a needle biopsy, which mostly eliminates points 3 and 4. (But read a little on 'false negatives'.)
1) there's no reasonable suspicion that it's cancer
2) there is a very believable alternative cause: fibrosis
3) nodes have a useful purpose, they shouldn't be cut out without good reason
4) surgery always has risk. A famous example is that Joan Rivers died from a routine cosmetic surgery
However, you can ask for a needle biopsy, which mostly eliminates points 3 and 4. (But read a little on 'false negatives'.)
3 Comments
Would you recommend the needle biopsy then? I mean you can be honest, I’m a nervous guy about my health but if you think I’m 99% in the clear then I’ll accept that. And believe me I don’t like surgery, I’d most likely ask for local anesthetic if possible, the doctors did say with how slender I am the nodes are very easy to get to. Still, given all that was said about my nodes do you think they are taking a watchful waiting type response? Or genuinely think I’m in the clear?
I guess I just want to know if the dr’s genuinely think I’m clear or just assume I’m clear and are taking a watchful waiting approach
Hey again, just wanted to update on I found a couple other little nodes, one in jugular one under my chin. I went to the ENT again who told me that he honestly thought my nodes felt completely normal just because I was so skinny, I told him how I know for a fact they weren’t that palpable before but he still said he seen no signs of concern. All were under a cm and freely mobile, two felt somewhat connect but still tiny and mobile and he said a biopsy of nodes this small had a high chance of coming back inconclusive even if they were benign just due to their tiny size. He said he will do an ultrasound now and another in a year for my peace of mind. The ‘new’ nodes he said don’t feel concerning either and I wonder myself if those popped up with the others and I just didn’t notice them until later. He did say that given the asymmetry of how I can only feel the nodes on one side, that there could very well be remaining scarring but wasn’t concerned about them either way
I’ll admit I’m still worried, I’d like the 100% confirmation but it’s been 6 months and the only oddities are the B12 ever so slightly low, and new nodes. Which like I said could have came up with the others and I just didn’t notice at first. Overall do you agree with his assessment? Or do you think more looking into it should be done?
I’ll admit I’m still worried, I’d like the 100% confirmation but it’s been 6 months and the only oddities are the B12 ever so slightly low, and new nodes. Which like I said could have came up with the others and I just didn’t notice at first. Overall do you agree with his assessment? Or do you think more looking into it should be done?
COMMUNITY LEADER
Your logical approach is very good throughout, Spartan. Here are some quick thoughts:
"family history of thyroid issues"
Then you are more likely than average to have various immune system problems. An infection can sometimes trigger autoimmune or autoinflammatory conditions. So whenever anything odd appears through the years, think of your immune system.
Maybe this episode was mono, from EBV. I personally believe that having an extra severe mono can mean one has a very reactive immune system.
"chest x-ray"
Probably were looking to rule out TB and sarcoidosis, which typically start in the lungs but can also make for nodes in the neck that are filled with granulomas (another possible cause of nodes that don't shrink back down).
"Doppler"
That looks for blood flow. Cancer makes new blood vessels to feed itself.
"came up overnight"
Cancer doesn't do that, then just stop. So that should be reassuring for you.
"virus"
It's possible that a virus acted to open the way for a bacterial infection in the lungs. The Abx defeated the bacteria but wouldn't kill any virus. It's somewhat possible, but not likely, that your system developed an autoimmune reaction to the Abx. Just be on alert to any rashes, etc., whenever you might take an Abx again. Remember the name of this Abx to correlate to the class of any future Abx.
There's still the very interesting delay, in that the virus didn't initially cause the fibrosis, neither the bacteria. Why is why I mention the Abx: the immune system detects the pathogen, then sets about experimenting over days with creating and testing different antibodies -- to best bind to the pathogen. Like making a series of progressively better keys to perfectly fit a complicated lock.
"family history of thyroid issues"
Then you are more likely than average to have various immune system problems. An infection can sometimes trigger autoimmune or autoinflammatory conditions. So whenever anything odd appears through the years, think of your immune system.
Maybe this episode was mono, from EBV. I personally believe that having an extra severe mono can mean one has a very reactive immune system.
"chest x-ray"
Probably were looking to rule out TB and sarcoidosis, which typically start in the lungs but can also make for nodes in the neck that are filled with granulomas (another possible cause of nodes that don't shrink back down).
"Doppler"
That looks for blood flow. Cancer makes new blood vessels to feed itself.
"came up overnight"
Cancer doesn't do that, then just stop. So that should be reassuring for you.
"virus"
It's possible that a virus acted to open the way for a bacterial infection in the lungs. The Abx defeated the bacteria but wouldn't kill any virus. It's somewhat possible, but not likely, that your system developed an autoimmune reaction to the Abx. Just be on alert to any rashes, etc., whenever you might take an Abx again. Remember the name of this Abx to correlate to the class of any future Abx.
There's still the very interesting delay, in that the virus didn't initially cause the fibrosis, neither the bacteria. Why is why I mention the Abx: the immune system detects the pathogen, then sets about experimenting over days with creating and testing different antibodies -- to best bind to the pathogen. Like making a series of progressively better keys to perfectly fit a complicated lock.
4 Comments
Well I’ve had the Abx before, infact ive always used this one because of my allergy to penicillin or zythromax, in terms of mono my doc tested me for that and the whole EB family. His list of blood work was just over two pages so I trust he was thorough and everything was negative.
With the immune system are you saying this simply makes me more likely to have something like ‘scar nodes’ or something more sinister is happening? My father had an undefined autoimmune disorder, had Celiac, juvenile rheumatoid arthritis and a strange type one diabetes set on as an adult, I know that sounds odd but the doc said he most definitely didn’t have type 2 given it’s relation to his immune system. Now I’ve been cleared by a very reputable hospital for anything inherited (I was born with congenital cataracts) the dr did also do the blood anti body test for celiac which came back negative.
With the immune system are you saying this simply makes me more likely to have something like ‘scar nodes’ or something more sinister is happening? My father had an undefined autoimmune disorder, had Celiac, juvenile rheumatoid arthritis and a strange type one diabetes set on as an adult, I know that sounds odd but the doc said he most definitely didn’t have type 2 given it’s relation to his immune system. Now I’ve been cleared by a very reputable hospital for anything inherited (I was born with congenital cataracts) the dr did also do the blood anti body test for celiac which came back negative.
Also it was brought on by a virus, my whole city was hit hard by it, I my fiancée my cousin and my grandmother all had it with very similar symptoms the only exception being my fiancées turned into a sinus infection rather than the chest. My poor grandma cracked a rib coughing so hard. We all had to get on Abx to clear it and the docs all said it was going around quick. So I’m confident in that much being only a virus.
I guess my main question would be given all this, if it were you, your child, or someone close to you, would you trust the dr’s opinions that it’s okay and that they’ve halted looking into it? I’m just worried about cancer given stories on here about people with something similar for months and years, which is why I want a biopsy done.
Given it wasn’t an EB family virus and there’s still no explanation or change so much later, do you still agree with dr’s? I really want a biopsy, I can’t stand the ‘watchful waiting’ approach and I just want this behind me. My doctors are completely done looking into this however. If you were in my position would you be happy with their word on the matter?
COMMUNITY LEADER
"i must emphasize they were not there prior to the illness"
Yep, you are very correct about saying that. We can go through some speculation on that if you like.
Yep, you are very correct about saying that. We can go through some speculation on that if you like.
1 Comments
The nodes didn’t pop up until a few days after stopping treatment. So I was sick for two weeks just about before the put me on anti booties which was a 10 day course, it went smoothly and all my symptoms besides the cough went away. Then after only a few days being done with the medicine the nodes swelled. They haven’t changed a bit since their initial swelling, were never sore even at first and came up overnight from what I can tell. The doctor thought it was maybe the anti biotic hadn’t got everything and my body caught the remnant before it could return and the ENT said he couldn’t explain it however was confident that they were related to the virus given how close in time the happened.
COMMUNITY LEADER
Hi, Spartan. I agree with the doc(s) who say that it is likely scarring (fibrosis). Usually, a node enlarges when immune cells inside multiply greatly, and then battle the invader (infection) outside the node. But think of your fibrosis as a buildup of rubble from when an immune battle happens right inside of a node.
Can you post the ultrasound report? We can see if it mentions anything troubling like calcification or cystic areas and so forth. (Probably it doesn't, though.) It was also Doppler, right?
I think we can sort of unify the 2 docs' opinions like this: tiny PacMans called macrophages have to take apart and take away the rubble, one brick at a time each. So it can take years, and seem like forever.
Yes, there have been more than a few like you who have come through this forum. Two very recent:
https://www.medhelp.org/posts/Leukemia-and-Lymphoma-/Enlarged-lymph-nodes-for-months/show/3043130
https://www.medhelp.org/posts/Leukemia-and-Lymphoma-/Swollen-Lymph-Node-for-10-months/show/3041824
Can you post the ultrasound report? We can see if it mentions anything troubling like calcification or cystic areas and so forth. (Probably it doesn't, though.) It was also Doppler, right?
I think we can sort of unify the 2 docs' opinions like this: tiny PacMans called macrophages have to take apart and take away the rubble, one brick at a time each. So it can take years, and seem like forever.
Yes, there have been more than a few like you who have come through this forum. Two very recent:
https://www.medhelp.org/posts/Leukemia-and-Lymphoma-/Enlarged-lymph-nodes-for-months/show/3043130
https://www.medhelp.org/posts/Leukemia-and-Lymphoma-/Swollen-Lymph-Node-for-10-months/show/3041824
2 Comments
I should also mention that my case of laryngitis (or whatever it was) was much more than a soar throat. It was a 101-102 fever for over 10 days, coughing so much I coughed up blood (which is why they scanned my chest) and I was not getting better at all until I got on antibiotics. I even had night sweats while sick although Im assuming that was linked to the high fever.
The only other thing the US noted was I had a 5mm cyst on my thyroid which I seen a specialist for given my family history of thyroid issues (no thyroid cancer however) I have no idea if the scan was Doppler however, my doc ordered an exam of the ‘head and neck structures’ with ‘lymphadenopathy’ as the reason.
The only other thing the US noted was I had a 5mm cyst on my thyroid which I seen a specialist for given my family history of thyroid issues (no thyroid cancer however) I have no idea if the scan was Doppler however, my doc ordered an exam of the ‘head and neck structures’ with ‘lymphadenopathy’ as the reason.
Hey Ken, given you agree it’s most likely scarring do you think it’s alright the dr’s aren’t investigating further? I really want a biopsy done and am having trouble accepting results when they aren’t the ‘definitive’ test. If it were you would you want a biopsy?
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